Cystic Fibrosis – CatholicVote.orghttps://www.catholicvote.org
The mission of CatholicVote.org is to educate and inspire Americans of all faiths to prioritize the issues of life, faith, and family.Thu, 24 May 2018 17:16:35 +0000en-UShourly1https://wordpress.org/?v=4.9.2The Stephen Herreid Show is a program where the dogma lives loudly.CatholicVote.orgcleanepisodicCatholicVote.orgmercer@catholicvote.orgmercer@catholicvote.org (CatholicVote.org)No mules were harmed in the making of this episodeCystic Fibrosis – CatholicVote.orghttp://catholicvote.org/wp-content/uploads/powerpress/cv-podcast-469.pnghttps://www.catholicvote.org
mercer@catholicvote.orgThe Stephen Herreid Show is a program where the dogma lives loudly. Cystic Fibrosis: A Little-Known Front in the Pro-Life Battlehttps://www.catholicvote.org/cystic-fibrosis-a-little-known-front-in-the-pro-life-battle-2/
https://www.catholicvote.org/cystic-fibrosis-a-little-known-front-in-the-pro-life-battle-2/#commentsSat, 13 Jul 2013 12:30:53 +0000http://www.catholicvote.org/?p=52664In a recent online debate I had with someone about abortion, they posed the question: “Do any of your children have cystic fibrosis?” When I responded that I did not, but I have friends who do, the immediate reply was, “So they were ok with bringing a child to term (it can be found in 1st trimester) to live a short life of suffering?”

I responded that killing a sick child is, for people like my friends, never even an option. But the question nagged at me. Something told me this was an inquiry from experience, and I wanted to know more. I do have friends with a child who has Cystic Fibrosis, but like so many friends I’ve made over the years, we’ve never met in person. We’ve corresponded over the Internet for the better part of a decade, and while I see their posts on Facebook about raising money to fight CF, or the struggles they have with their son, I have never witnessed first hand what they go through. To make matters worse, I wasn’t fully aware of just how debilitating and life-threatening CF truly is.

So I reached out to my friend, Scott Broadway, to ask him about his experiences. What he told me shocked and saddened me, and I realized that this is a fight that many in the pro-life movement — even those who are reasonably well informed — know little about. Scott and his wife Allison live near Orlando, Florida and are parishioners at All Souls Catholic Church. Their oldest son Scotty has CF. Their youngest son Lucas does not. They are expecting a third son named Landon in September 2013.

The first thing that Scott told me was that 16 out of 17 children discovered to have CF in the womb are aborted – a staggering 94%. In addition to the 80% of Down’s Syndrome children who are killed in utero, eugenic abortion is a mind-boggling problem in America.

I wanted to know more, and Scott agreed to an interview to help raise awareness of this difficult issue.

Anyone can look up a medical definition of Cystic Fibrosis. From the perspective of a parent of a child with CF, can you explain what this disease is and what it’s like to live with it?

Within days of my wife and I becoming new parents, our son Scotty was hospitalized and later diagnosed with cystic fibrosis. We were terrified at our first doctor’s appointment at the CF clinic. The pulmonologist gave us a few analogies to help us wrap our head around our vulnerable newborn son’s disease. “Having a child with CF,” he said, “is like owning a British automobile.” It requires quite a bit more maintenance than a “normal” car. Several of the systems will never work the way you expect. But if you take good care of it, it can be very rewarding. An incomplete analogy, but it lightened up the mood a bit.

He also explained how CF usually varies from person to person. There are over 1,500 gene mutations (many of which are still misunderstood) that can result in CF, and any given person who has CF inherits a few of those mutations from their parents. In most cases, though, CF means that you have problems with your lungs. A genetic defect in the material that makes up your mucous membranes means that you can’t produce “normal” mucus. This is problematic because the lining of the lungs cannot fight bacterial infections effectively and instead produces thick, clogging mucus that makes you cough. Eventually, this starts damaging your lung tissue and makes it difficult to breathe. Respiratory therapies are a daily part of living with CF.

Other common symptoms include the inability of your pancreatic enzymes to reach your intestines and help digest fat and protein. This prevents you from getting proper nutrition or gaining enough weight. My son takes enzymes before every. Single. Meal. On the other hand, he can eat tons of calories and yummy fat and lots of salt and not ever worry about it…that kind of thing is good for him!

I often get caught up in how much my son’s CF had changed our family’s life that I lose sight of how he perceives it. My son’s hospital recently produced a very compassionate video that explains what it feels like to be a kid and have CF.

What is the life expectancy of someone living with cystic fibrosis?

When CF was first identified in the 1930s, children regularly died under age 5. As doctors learned how to develop better lung therapies, this extended toward the teens. My wife’s cousin, Christina, had CF. She passed away in 1997 at age 14.

Believe it or not, 1997 is like the dark ages when compared to today. The Cystic Fibrosis Foundation is at the forefront of research to cure this disease, and they say that kids like my son born recently will have an average life expectancy of 37 due to the latest therapies available.

My friend Jamie Crane nearly met his end with CF at age 26. In early 2012 his lungs were nearly failing. Fortunately, a double lung transplant saved his life. Later that year he married a beautiful young woman and a year later he’s doing great. He has started a foundation to benefit lung transplant patients.

At the other end of the spectrum, Jena Cassalina lost her life at age 13. In 2006, toward the end of her fight, her family took her to France seeking intercession and healing via Our Lady of Lourdes and St. Bernadette. Jena’s mother Margarete chronicled these struggles in her book and her blog “Beyond Breathing.”

We all know we will die. We don’t know whether we will face an early death or will see the dignity and infirmity of old age. The difference is that my son faces a daily fight against the disease that will probably kill him. As a father, I still don’t know how to explain this to him. Or to myself.

There is a higher rate of abortion in pregnancies where CF is detected than there is even with Down Syndrome. Why do you think that is?

It is stunningly high. We already know that Americans kill approximately 9 out of 10 babies diagnosed in utero with Down syndrome. The numbers on CF are a bit more private, unfortunately. One of the only known statistics comes from a Kaiser Permanente report indicating 16 out of 17 babies diagnosed with the most serious CF mutation were killed before birth. If one in every 3,000 babies is born with CF, that means about 1 in 178 is conceived with CF. A huge number of couples are aborting these children and dealing with that kind of loss and shame. They do so largely because of today’s near-universal access to prenatal testing. This testing is unfortunately biased toward what one author terms “commercial eugenics.”

These astonishing CF abortion numbers could infer that our country is focused on eliminating this disease. However, if Americans were really serious about preventing the genetic transmission of CF, all babies with at least one copy of a CF gene would be culled or sterilized because they are “genetically unfit.” This would mean that 10 million people in the US would be “unfit” since they carry at least one copy of one CF gene mutation. Since we are not yet at that dreadful point, we can draw only one conclusion about today’s CF abortion statistics: killing a baby with CF lets parents avoid the inconvenience and suffering of caring for a child with medical problems who may die young. Mother Theresa had a better phrase for this selfishness.

This moral poverty is clearly evident if you look at a recent case where an expectant couple was not offered a blood test to identify CF in their unborn daughter. After the baby was born, they sought legal revenge on their medical providers for not giving them the opportunity to kill their supposedly-burdensome daughter. A judge agreed with their case of “wrongful birth.”

Have you and your wife faced pressure from doctors and medical professionals to either not have children, or to abort the children you have?

Sadly, yes. Ubiquitous access to prenatal screening also means that nearly every OB/GYN’s practice is conditioned to preach contraception for CF carriers. A scared pregnant mother is also particularly vulnerable when you embellish to her how much her baby with CF will suffer, and how much her life will have to change when dealing with the child’s chronic medical problems. This is manipulation, not compassion.

We know this firsthand because my wife and I had a struggle with infertility. In the end, we only needed very minor pharmaceutical intervention to conceive. When talking at one of the fertility clinic visits, the endocrinologist made sure to tell us about a technique where she can conceive embryos in vitro, test them, “screen out” embryos with CF [her own words], and implant only “good” embryos. Horrified, my wife and I let her know what we thought of that! But this type of consultation happens EVERY DAY. Fertility doctors who already play god with embryos can easily manipulate the delicate emotions of infertile couples and assure them that they can have a perfect baby without the inconvenience of CF.

We’ve even had friends and [even more sadly]family members critique our *intensely* *personal* *marital* decision to have more children. We’ve even been asked about it *after* becoming pregnant. Since my wife and I both carry recessive CF genes, each time we conceive there is a 1 in 4 chance the baby will have CF. If you forgot your primary school biology, here’s what that looks like.

Prenatal diagnosis can be a good thing to inform parents when prenatal or postnatal intervention is necessary to save the child’s life. However, these sort of tests are seldom framed with such benevolent intentions. They are dramatically increasing the incidence of abortion. Newer tests require no amniotic fluid and can use a simple blood sample from a pregnant mother. Hidden within these tests is the false promise that if you “find out earlier” you can abort earlier, and maybe you can pretend like you didn’t kill your child. [If you are reading this and have had an abortion because of CF, please please please go to Rachel’s Vineyard to find out more about post-abortion healing.]

Am I categorically opposed to prenatal testing for CF? No. We’ve done them for our other two children because it is the responsible thing to do. You just have to inoculate yourself against what you are told by pro-abortion healthcare providers.

I’ve been aware of Cystic Fibrosis for a long time, but I never knew much about it. Until recently, I had no idea how intense the fight is over right-to-life for those children determined during pre-natal screening to have CF. Why do you think pro-lifers are largely in the dark about this issue?

The numbers on CF and abortion are kept intensely private, as if it is some sort of “medical decision” between spouses to kill a child out of selfishness. That Kaiser Permanente report is one of the only studies of its kind. My wife and I hope that the pro-life community remembers to preach how all children are gifts and deserve life, even those with CF, Down syndrome, spina bifida, Trisomy-18, anencephaly, and all other medical conditions. An end to abortion will only happen when our culture has no selfish desire to abort children and puts the force of law behind those values.

Is there a cure for CF on the horizon? What will it take to get us there?

Yes, absolutely! CF is one of the diseases that is very, very close to a real cure. In 2012, after years and years of research and testing and hopes and prayers, Vertex Pharmaceutical introduced Kalydeco, the first drug that treats one of the underlying genetic causes of CF. My wife and I know some people who have been prescribed this drug, and they are truly feeling better. Vertex also has more promising CF drugs in the pipeline within the next 3-5 years. Vertex’s success would never have been possible without the concentrated force of research and fundraising from the Cystic Fibrosis Foundation.

The UK is working on an ambitious gene therapy project to cure CF. The last I checked, the study was running low on money and behind on time, but the ultimate results may be even more promising than pharmaceutical therapies.

How treatable is CF? How far have things come in terms of making the lives of those with CF comfortable and manageable?

Remember the British automobile analogy? CF can be very time-consuming and very expensive. Doctors and therapists struggle to develop therapies that CF patients can actually do at home and don’t require half a day; if a home therapy isn’t very convenient, a patient won’t comply very well and it won’t be very effective. CF can also be extremely expensive. I struggle ALL THE TIME with all of the pharmacies and doctor’s offices and medical suppliers. And I’ve got fairly benign private health insurance! Based on what we know from friends, public health insurance adds an exponentially worse headache because you must fight to justify every $5,000 prescription and $13,000 machine and $2,000 test and $20,000 hospital stay.

This is best illustrated by the Irish National Health Service. A single patient’s yearly Kalydeco costs exceed US$200,000 because of how Vertex chooses to price their products. Ireland initially rejected the drug because it was too expensive. I suppose their actuaries decided that it is less expensive to spend gobs of money to hospitalize suffering CF patients than to give them a drug that fixes a root cause of hospitalization AND prolongs the patients’ lives. Fortunately, the Irish government changed their minds and will provide the drug to the patients with the most medical need. Politicians and activists must continue to fight for the rights of the sick and vulnerable to prevent rationing and a soft and seductive kind of state-enforced euthanasia.

Is there anything you’d like people to understand about living with CF that isn’t widely known?

Isolation separates the CF world. Friends and family often don’t know what to say and don’t understand why you have to be so diligent with therapies and avoiding infections and getting good nutrition. Sometimes they become distant. CF patients and their families need lots of compassion and support but seldom get enough of it. This cultural gap needs to change if we expect scared parents to stop aborting CF children (or any other children, for that matter).

Did you know that CF patients should never be close to one another? They could exchange their germs and catch serious lung infections. No, you can’t catch anything from a CF patient. Your lungs are healthy and can fight common bugs like Pseudomonas aeroginosa and Burkholderia cepacia. At CF fundraisers, CF patients are barred from being close to one another for fear that they might exchange these dangerous germs that can permanently infect their lungs. As a result, people with CF usually don’t know many other people with CF. The internet changed this entirely. The documentary film “65_redroses” describes one woman’s friendship with other CF patients online as she waits for a lung transplant. Through Facebook communities, my wife has met tons of other CF parents and patients and healthcare providers who help share medical advice, sorrow, prayers, and victories. We really don’t know what CF was like before everyone could find one another and discuss how we’re going to fight and cure this thing.